Paulette's 14th Blog Post | Hear My Voice

Happy May my friends! I want to thank all of you who responded to the questions I posed at the end of last week’s blog about what you are doing in your meantime. And please know that if I have not yet responded to you personally, I will. It’s just that this week’s meantime for me has been much busier than anticipated!

So let’s get down to business. Amari is still in China with the American Boychoir, stunning audiences in every city they perform. He will be back in just five days, and YES, you’d better believe it – I’m counting! When we spoke by video chat two days ago, he told me his favorite part of the trip was visiting the Panda Zoo.

This past weekend I attended a conference in Philadelphia called “Thriving Together” sponsored by Living Beyond Breast Cancer (abbreviated as LBBC for the rest of this post). This amazing organization was founded in 1991, and its vision is “a worldwhere no one impacted by breast cancer feels uninformed or alone.” Based on my experience this weekend, this vision is being fulfilled. There were over 400 people gathered at this conference, which took place along the beautiful Delaware River Waterfront in Philadelphia with a breathtaking view of the Benjamin Franklin Bridge. The assembled group included over 250 women and men living with metastatic breast cancer (abbreviated as MBC for the rest of this post), our caregivers (spouses, parents, friends, siblings, etc.), in addition to medical professionals, presenters, vendors, and organizations that advocate for us. I felt blessed that my mother joined me for the conference. Thank you, Mom!

The conference was informative, inspiring and intense. I was blessed to be part of a cohort of about 25 women and one man currently living with MBC. We were selected from over 80 applicants to be part of this year’s training program called “Hear My Voice,” a Volunteer Outreach Program that provides the tools and training to help people living with MBC make a difference in their physical and digital communities. LBBC paid for our travel, lodging and meal expenses, and in return, we received expert training about how to spread the word about MBC. Compared to early stage breast cancer, MBC gets little to no attention unless one is diagnosed with it. Therefore, when a diagnosis occurs, many women are clueless about what this means. Our mission is to change this! Now is probably a good time to stop and answer the question you may be asking, what is metastatic breast cancer? I’m glad you asked!

Metastatic breast cancer, also known as Stage 4 breast cancer, means that the breast cancer has spread beyond the breast and into another part of the body. The usual places it spreads are the bones, lungs, liver, or brain. When it appears in these places, it is still breast cancer, NOT bone, lung, liver or brain cancer. I want to make sure that is clear because many people don’t understand that. Currently, there is not considered to be a cure for MBC, although many treatments are available that can reverse the spread of the disease and help keep it stable for extended periods of time, even years. Because of the treatments, women and men living with metastatic breast cancer may have active disease inside their body, but on the outside, may not appear to be sick. When I share my diagnosis, people often say, “But you look great! You don’t look sick at all!” While it’s nice to hear these things, the reality is that I have a compromised immune system and I am constantly in the healing process. But thank you for the compliments!

Because there is currently no cure available for MBC, it is often called terminal. Hearing that you have a ‘terminal disease’ is not encouraging; in fact, it’s devastating. No one wants to hear this. Therefore, I’d like to say something loud and clear right now: LIFE IS TERMINAL!! That means we are all going to die one day of something, whether it’s cancer, another illness, a car accident, a random act of violence, old age, or any number of other causes. And not one of us knows the day or the hour that our death will occur. Thus, it behooves each of us, regardless of our medical condition, to live each day fully as it if were our last, because we never know if it could be.

The spirit of courageous living was on full display in the many sisters and brother I met over the weekend who, like me, are living abundantly despite their diagnosis, knowing that we will most likely be in treatment for the rest of our lives. I was inspired by the stories the people shared with me, some who have been on this journey for only a year or two, and others who have been traveling this path for many years. Although no two people’s cancer journeys are the same, we gain strength from others going through situations like ours. Because they have overcome, we know we too can overcome. Because they have passed through the storm, we know we too can pass through the storm. Because they have conquered what doctors have told them was unconquerable, we know that we too are more than conquerors! In one of my favorite passages from The Bible in the book of Romans, the Apostle Paul talks about nothing being able to separate us from the greatest gift of all, LOVE. Not trouble, hardship, persecution, danger, or cancer (my addition!) – neither death nor life, neither the present nor the future, nor any powers, nor anything else in all creation can separate us from the greatest gift of all – supreme, unconditional, everlasting love. Because of my faith, I call this the love of God, manifest through the love of my family, friends, church members, co-workers, and all those who have known me in the various phases of my life. I hope you can look back over your life and say the same is true for you!

Today’s post is only a fraction of the wealth of knowledge I gained from the Thriving Together Conference. As a Hear My Voice trainee, I’ll be completing at least two outreach activities in the coming year specifically to increase awareness and education about metastatic breast cancer. One of my activities is to write a four-part series on this blog entitled Hear My Voice. What you have just read is the introduction to this series. In the coming weeks, I’ll address issues like men and breast cancer, the invisibility of people with MBC, resources for people with MBC, and what role YOU can play personally in the epidemic of metastatic breast cancer. It’s going to be an information-packed series, so I invite you to follow it and share it with others.

I’m sure each of us knows at least one woman or man who has been diagnosed with breast cancer, and you also probably know someone who has died from breast cancer. People don’t die from early stage breast cancer; they die from metastatic breast cancer. MBC touches all of us in some way because if one member of our community is affected, we are all affected. So please, walk with me over the next four weeks, starting next week as we explore the topic: Stage 4 and Fabulous! See you then!